Today at work I participated in a meeting, which was really just a gathering of co-workers for the purpose of connecting and visiting with one another for a couple hours. We all worked through a version of an icebreaker activity commonly referred to as “Rose, Thorn, and Bud.” In…
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As a Friedreich’s ataxia (FA) patient well along in my symptom progression, I have a strained and emotional relationship with my mobility. Over the last three or so years, that same internal struggle has extended to my mobility aid. I am lucky that I lived a wonderfully carefree and…
Research into my rare disorder, Friedreich’s ataxia (FA), seems to me to be on the rise. Though no specific treatments for FA exist, a wide range of ongoing studies is exploring different ways of treating this debilitating disease. It seems that scientists increasingly are taking an interest in FA.
Welcome! Pull up a chair and pour yourself a glass of something nice and refreshing. You deserve some time to rest and reflect on what you need today. As a caregiver to a son with Friedreich’s ataxia (FA), my constant desire is to find ways to be helpful to him…
Life with Friedreich’s ataxia (FA) requires constant adjustment and acceptance. I have to adjust to new symptoms regularly, whether they are temporary, like extra fatigue during a particularly busy season, or permanent, like the frustrating decrease in my walking speed. I have to adjust to safely accommodate these new…
Life is more fragile than I sometimes realize. This is true for everyone, rare disease or not. Most days, I feel invincible and think about the next 40 years of my life. On other days, I recognize that I may not lap the four-decade mark again. I know the prognosis…
I greatly admire people with an optimistic outlook on life, those who see the best possible outcome in all situations, point out silver linings during hard times, and encourage disheartened or apprehensive people. I used to be an optimist. Before I had any real hardship in my life, I didn’t…
I’m a big fan of holidays, parties, and any other reason to be festive. I love celebrating birthdays, beginnings and ends, milestones, anniversaries, and everything in between. I enjoy celebrations because they force me to focus on someone or something other than myself. They allow me to just be happy,…
“You ready to get crazy?” Damon Vincent, both the founder of this gym and my personal trainer, greeted me the same way he normally does before my workouts. Sometimes he uses both cheesy statements and bad puns to motivate his clients, like when he says…
Advocacy seems to be taking on a new meaning for me as the years pass and I become more comfortable in my own body. In addition to increased confidence in myself, the Enneagram personality test I previously wrote about is still proving to be valuable in helping me understand…
The other day, I experienced a strange moment. As usual, at the end of my son’s baseball game, I had to just sit there waiting for help while everyone around me was busy packing up snacks, folding chairs, and gathering all of the equipment required for Little League spectators.
Hello, friends, old and new! Spring is coming to a close, and the days are getting longer and hotter down here in Alabama. I hope that you have some time today to reflect and be proud of how far you have come. You are worth celebrating, and the world would…
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